Earlier this year, New York Governor Andrew Cuomo announced his plan for the 2020 state budget, including a 3.6% planned budgeted increase to overall health care spending. When proposed tax revenue estimates came in much lower than anticipated, the administration decided to cut approximately $550 million of this increase. But after strong advocacy effortsfrom many health care groups across the state, the Governor and his administration changed their position, keeping the $550 million Medicaid increase in the budget.
BAYADA’s Government Affairs Office (GAO) participated in several conference calls with the New York State Home Care Association (HCA) to learn more about Medicaid spending, which accounts for 42% of the budget, and what we and our office staff, clients, and families can do to advocate for higher wages for home care nurses through increased reimbursement rates.
Currently, New York’s Medicaid reimbursement rates are well-below surrounding states, so many caregivers are discouraged from entering—or staying in—the home care industry due to abysmal wages. It also impacts BAYADA because the rates are currently so low that we are currently not be able to provide sustainable Medicaid-based home care in the state and pay caregivers an appropriate wage.
As part of a larger national trend, New York did vote to increase the statewide minimum wage to $15 per hour incrementally through 2021. New York understands that home care providers that do provide Medicaid-based services would not be able to comply with this minimum wage mandate and stay sustainable under current rates. The final budget did include an additional $1.1 billion to support the cost of raising minimum wage for health care workers. BAYADA is currently advocating for similar increases in other GAO states that have increased the mandatory minimum wage, but have not increased reimbursement rates in tandem. Medicaid rates must keep pace with the rising cost of living and increased wage mandates to ensure that providers can stay in business, and to ensure that vulnerable New Yorkers can have access to quality home care.
Delaware Ambassadors and employees have set participation records at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).
The first, the Delaware Association for Home and Community Care (DAHCC) Legislative Day on March 13, had a record attendance of more than 50 attendees! 41 registered for the event, which would have been a record itself, but the larger-than-expected turnout was an impressive surprise. Seven providers, including BAYADA, were represented, and the crowd included six families advocating for themselves and their nurses. Everyone wore their own company’s branded gear but united behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.
In another first for Delaware, two legislators spoke in support of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House Majority Leader, Representative Valerie Longhurst. Both spoke passionately about the importance of home care in our communities and the need to increase reimbursement to ensure that this vital care is available to those who rely on it. They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.
A week later, on March 20, Delaware advocates broke another record when 15 members of our community testified before the powerful Joint Finance Committee (JFC) in support of increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott, Danielle Myers, Shannon Gahs, Dave Totaroand representatives from Epic/Aveanna and Maxim/Aveanna. Client Haley Shiber was unable to attend in person but sent a powerful testimony video to the JFC members before the hearing. The Joint Finance Committee hears budget requests from all state agencies and testimony from the public before making an annual budget recommendation to the full General Assembly. The General Assembly frequently follows the majority of those recommendations. Members of the committee told BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!
The industry-wide coalition led by BAYADA and DAHCC is pushing the Delaware legislature for a 21% increase in the Medicaid home care RN and LPN rates, which would impact our Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less than Medicaid fee-for-service, these new higher rates would have to be paid not only for “straight Medicaid” hours but also those funded by managed care in Delaware. These two rates currently remain at their 2006 levels, harming our ability to recruit and retain the highly-skilled RNs and LPNs that are so important to the lives and welfare of our clients.
Thank you to our advocates who turned out and made sure that Delaware’s decision makers know that we are here to advocate on behalf of our staff and clients, and that home care makes a difference in the lives of so many Delawareans!
Great things happen when we advocate together! After years of advocacy from BAYADA, our partners, and many parents and home care employees, the Maryland General Assembly recently passed two pieces of legislation that collectively will increase all Medicaid home and community-based services reimbursement rates by more than 30% over the next six years. Though initially met with opposition from Governor Larry Hogan, the Maryland General Assembly heard our voices and overwhelmingly voted to override his veto of one of the bills.
The first bill, the state’s annual budget, provides a rate increase of 3% that will go into effect July 1, 2019. The second bill, also effective July 1, 2019, contains an amendment which will increase reimbursement rates by 4% each year between July 1, 2020 and July 1, 2025.
Currently, Marylanders who rely on in-home nursing care have only 83% of their authorized hours filled, meaning that families struggle to fill their medically complex loved ones’ skilled home nursing care nearly 20% of the time! We have found that Medicaid rates have stagnated below the cost of living and below wages seen in other settings—such as hospitals and facilities—and surrounding states—and that families were struggling to fill these hours. We are hopeful that these access-to-care issues will be alleviated as providers will be able to recruit and retain nurses within the home care industry, and that more of Maryland’s most medically complex will be able to stay safe where they want to be—in their own homes.
This was a true team effort led by BAYADA and the Maryland National-Capital Area Home Care Association (MNCHA) and including MNCHA member providers, several individual families, parent advocacy organizations and disease-specific advocacy organizations. Special thanks to JoAnn Saxby, Patrick O’Malley, Eddie Dyer, Patty Watson, and Susan Ingallswho all played important parts in making this happen and to BAYADA Delaware employees Mandy Brady, Kristyn Kelsch, and Taylor Kosinski who went above and beyond to advocate in their sister state. Mike Sokoloski, Tara Montague, and Nicole Onofrio were instrumental in supporting two Town Halls and Legislative Day, and Alisa Fox coordinated timely articles in The Baltimore Sun, The Washington Post, and on WDVM TV in Western Maryland. Maggie Tracy managed countless logistical hurdles and supported direct lobbying and grassroots efforts.
Thank you to everyone who played a role in this major achievement! Advocacy cannot succeed if only one voice is heard, and your advocacy has contributed to the well-being of so many Marylanders in need of home care.
For more information on this increase, or how you can get involved in advocacy in Maryland, please contact Shannon Gahs at firstname.lastname@example.org.
Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.
Meeting Addy and Gloria
First, the team stopped by a BAYADA service office in Dover, NJ to meet the staff and learn about the struggles the office regularly faces in recruiting and retaining home health aides. Per staff member Helena Anton, challenges lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that “you can tell are put on this earth to care for others,” as Helena puts it.
“Smaller home health care companies can usually pay the caregiver more in wages because we put that money into benefits, training, and supplies. But the real problem is that Medicaid reimbursement rates are so low that these caregivers—no matter what company they work for—aren’t making enough. That’s why we need to advocate to make sure the state sees how low wages are impacting so many New Jerseyans that are able to live and their communities and thrive with home care,” added Helena.
After the discussion, the Hearts for Home Care advocates met home care client Addy and her aide Gloria. The crowd was nearly brought to tears by Addy’s story regarding the challenges she has been able to overcome with her “teammate”—which is what she calls Gloria.
“I was extremely touched by Addy’s and Gloria’s relationship. Not only is it clear how much Gloria has impacted Addy’s daily life and her sense of self-worth, but the way that Gloria talks about Addy’s influence on her own life is incredible. You can tell that Gloria was truly put on this earth to be the nurturing, compassionate caregiver that she is,” said Tara Montague.
Recently, Addy and Gloria visited Senator Steve Oroho to share their story and to advocate for better state home care policies. “Helping people is important. And it’s important that those who help others get the help that they need too,” Addy told the group. Addy recommitted to continuing to advocate for herself and for others who are impacted by home health care. “I want to share my message with legislators. It’s my way of giving back,” she said.
Lili and Emma Welcome Advocacy into Their Home
Next, Dave, Tara, and Alisa traveled to Morristown to visit home care client Liliana “Lili” and her mother Emma in their home. As a single mom, Emma relies on home nursing so that she can keep her full-time job and keep Lili at home. She told us that her service office team works hard to ensure that every one of Lili’s shifts are covered. She also shared about times when that coverage wasn’t so steady: “Our routine and our comfort level is only as good as today…When Lili’s main nurse Liz retired, we had a few months where we didn’t know what tomorrow would bring.”
Lili benefits from New Jersey’s private duty nursing (PDN) program, which allows for children and adults with skilled care needs to live at home. Without this program, it is unlikely that Lili would have been able to grow up with her mom and graduate from school as she did. The PDN program’s rates need to be raised in order to better attract more nurses to home care, as most can currently make a higher wage delivering skilled care in a hospital or nursing home. One of Hearts for Home Care’s major advocacy goals for 2019 is to educate legislators on the need for a rate increase and to secure one on behalf of all New Jersey home care clients, families, and nurses.
Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that other families can receive the home care that they need too. In recent years, Emma has hosted state elected officials in her home. “Seeing our daily routine and how important it is for Lili to have a nurse at home is the most impactful way for an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili, but for those in the state who are struggling to get the nursing they need.”
“It’s our clients’ and families’ voices that make the biggest impact on our state and federal elected officials’ decisions about home care. Because of advocates like Addy and Emma, legislators better understand the impact home care has on their communities,” said advocate Dave Totaro, who also serves as BAYADA’s chief government affairs officer.
There are plenty of ways to advocate, even from home! To find out ways that you can make an impact, contact us at email@example.com. Together, we can share our voices to make 2019 the best year for home care yet.
We know the struggles families can face with home care: The call-outs and missed shifts, the lack of sleep, the caregivers who are like family but can’t afford to make their own ends meet, and the frustration that comes when you or your loved one can’t access the care that is deemed medically necessary. We also know the value and impact that sharing our voices has.
Recently, home care advocates have made the news for their efforts across the country. Specifically, on December 28, the Washington Post covered the impact that providers and parents are having in driving public awareness of the struggles that Marylanders and Virginians are having in accessing the skilled nursing home care their families need.
Washington Post reporter Tara Bahrampour points to low reimbursement rates in both states as the major issue contributing to families’ struggles—
“The reason lies in a stark state-by-state discrepancy in the pay in-home nurses receive through Medicaid. Maryland and Virginia have set reimbursement rates significantly lower than surrounding jurisdictions…As a result, licensed practical nurses [LPNs] are finding more lucrative positions out of state or at hospitals or other care institutions that pay more, leaving many homebound Medicaid patients without services.”
Hearts for Home Care has been leading the charge in Maryland, where a coalition of home care clients, parents, providers, and other advocates are pushing for a 25 percent increase for skilled home nursing services. Advocates say that this increase—half of which would have to come from state coffers—would serve to alleviate families’ inability to access care an average of 17 percent of the time, as reported by the state’s Department of Health. Hearts for Home Care advocate and BAYADA Home Health Care director Shannon Gahs says:
“Maryland is failing its citizens who have significant medical disabilities. Failing to provide care 17 percent of the time not only creates a dangerous situation for the person who relies on that care—it harms his or her family. Parents are calling out of work and losing the sleep they need to stay healthy to support their family. They’re doing everything they can to keep their family members safe, but this is not how it is supposed to be. We have to do better.”
In comparison, neighboring Delaware found that shifts are missed 7 percent of the time. There, the state reimburses providers at a rate approximately 30 percent higher for LPN home care services.
In California, Governor Jerry Brown recently proposed a whopping 50 percent wage increase for home care nurses—a move that advocates have pushed for over the past several years. As with families across the country, Californians who require skilled nursing home care have been struggling to get nursing care for their loved ones. Advocates report that under Medi-Cal—the state’s health care system for low income and disabled Californians—rates have not been addressed in 18 years.
While both the Maryland and California proposals are still pending, home care advocates have been successful in driving public and legislative awareness of low reimbursement rates and the impact on families’ access across the country in recent years. Most recently, the home care industry has seen reimbursement rate increases in Rhode Island, Massachusetts, South Carolina, and New Jersey among other states. It starts with educating legislators through advocacy via any number of channels: Traditional and social media, letters, phone calls, meetings, and more.
While advocacy can seem like an intimidating activity to many who do not yet engage in it, it’s important that we share our advocacy wins with the home care and health care community at-large. As illustrated in recent news, when we band together to leverage our voices in unison, big changes can happen. It’s important to take that first step and make your message heard on behalf of the millions of Americans that rely on home care.
GAO is excited to announce its first legislative accomplishment in Rhode Island: A Medicaid rate increase for personal care and skilled care services! The 10 percent increase to CNA services and 20 percent increase to nursing services are effective as of July 1, 2018. The State of Rhode Island intends to implement these rates by October 2018 and payments to services will be made retroactive. This increase will allow for BAYADA’s Rhode Island service offices to recruit and retain more quality caregivers and care for more Rhode Islanders that want to remain independent and healthy at home with their families.
We couldn’t have done it without you. BAYADA staff, clients, and families were instrumental in this win. Advocates submitted nearly 25 testimonies to legislators, spoke at hearings, and participated in online action alerts. While BAYADA’s Government Affairs Office (GAO) and our state partners supplemented your messages media coverage and direct lobbying to ensure continued pressure on legislators and governor, the quick and efficient mobilization of our office staff, field staff, was our secret sauce! It was inspiring to watch our advocates take initiative and transform their passion into action.
In addition to this monumental increase, the legislation included a Cost of Living adjustment (COLa), which is unprecedented. A COLa ensures that the governor and legislature must include yearly increases for these home care services in each budget going forward. The COLa will be dictated by a national database, specific to health care costs.
But our work isn’t done yet. Rhode Island’s reimbursement rates remain approximately 20-30 percent less than Massachusetts’s rates. Without additional increases, we will continue to face challenges with recruiting, training, and retaining high quality caregivers because they can make a higher wage in other settings.
This legislative session, we are continuing to educate our elected officials about why it is imperative that the state support and invest in home care services to keep our medically fragile Rhode Islanders at home. GAO has scheduled meetings with legislators, coordinated home visits and roundtable discussions with elected officials and regulators, and have developed the tools and resources necessary for our in-office and client advocates to take action.
Thank you to all our advocates – the progress Rhode Island has made is a direct reflection of your engagement and your willingness to share your stories! To learn about how you can get involved in advocacy, email firstname.lastname@example.org.
Great news for our NC Habilitation offices that operate under Partners Behavioral Health, a Local Management Entity/Managed Care Organization (LME/MCO) that oversees Medicaid’s Innovation Waiver in western North Carolina. After more than of a year of advocating for rate parity for like services, Partners announced yesterday rate increases for community-based services. The Community Living & Support rate will see a 9% increase, bringing it to $20.28 effective August 1, 2018.
This much-needed increase will allow BAYADA to hire and retain more qualified professionals and take care of more individuals at home and in the community. While this is a great step forward, our work is not done yet. BAYADA, along with our Hearts for Home Care advocates, will continue to push towards more rate increases so that we can ensure that North Carolina has enough high-quality caregivers to meet the growing demand for home care services. Our field staff deserve better wages, and our clients and all of those who wish to remain at home in North Carolina deserve better access to quality services.
Thank you to all our advocates who supported this increase through your input and your contact with legislators. We truly are #StrongerTogether.
Great news for BAYADA clients and the many North Carolinian disabled adults that wish to remain at home with the help of in-home caregivers! The Medicaid CAP-DA program will see a rate increase from $13.88 to $15.60, effective January 1, 2019. This increase brings parity between the three Medicaid aide programs, Personal Care Services (PCS), CAP-C for Children and CAP-DA for disabled adults.
This much needed increase will enable BAYADA to hire and retain more quality caregivers to serve the many adults with disabilities in North Carolina. Thus, our service offices that serve CAP-DA eligible clients will be able to staff the necessary cases and keep families together and keeping clients whether they want to be – at home.
BAYADA’s Government Affairs Office (GAO), collaboratively with the Association for Home & Hospice Care, worked behinds the scenes with both Medicaid and key lawmakers to ensure this provision was adopted this session. Additionally, we made great strides towards this increase during our 2018 Legislative Day in which several client advocates came to share their stories with lawmakers and talk about the necessity of such increases. Thank you to those who came and shared their voices! We will continue to fight for higher rates to ensure that all North Carolinians will be able to access high-quality, reliable in-home care.
On May 16, lawmakers will return to Raleigh for North Carolina’s 2018-2019 Legislative Session. Issues are likely to move very quickly as this is the second year in the legislature’s two-year cycle. Unlike the cycle’s first year, this year’s purpose is to make budget adjustments and finalize any carry-over bills. GAO has been meeting with key members in leadership to garner necessary support for our 2018 priorities (see below). GAO hopes that primary elections, redistricting, and Medicaid Transformation do not consume all the oxygen in the room so that legislators can get some work completed before concluding in June.
2018 Key Legislative Priorities:
Technical correction to increase the Community Assistance Program for Disabled Adults (CAP-DA) rate from $13.88 to $15.60, effective October 1, 2018
Increase the Personal Care Services (PCS), Community Assistance Program from Children (CAP-C), and Community Assistance Program for Disabled Adults (CAP-DA) rates to $17.00 effective January 1, 2019
Protect Certificate of Need (CON) from elimination.
If you have any questions about our 2018 priorities or how you can help advocate, please email me at email@example.com
Angela Ortiz is a fierce advocate for her medically complex daughter, Ayla, and for other medically complex children and adults across Massachusetts.
Earlier this month, Angela delivered her keynote address at the 40th Annual Legislative Reception held by the Massachusetts Developmental Disabilities Council and The Arc of Massachusetts.
Angela’s inspiring speech, delivered in front of over 200 people, including several state legislators and Massachusetts Governor Charlie Baker, was met with uproarious applause and overwhelmingly positive feedback.
Angela stated, “One mother shared with me that she used to have that fight and fire within her when her daughter was younger, but that her flames had since burned out. She shared that my speech really spoke to her and reminded her of how important it is to find it again. I hope that sharing my story and my journey will inspire others to take action… No matter how slow-seeming your journey may be, it’s important we remember why we advocate: To give a voice to those without one.”
Angela is the founder of the Massachusetts Pediatric Home Nursing Care Campaign that was launched in April 2016 to address the longstanding crisis families have been in struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home.
Below is the full transcript of her keynote address.
Next month will mark two years since I entered the State House with a group of parents from the Mass Families Organizing for Change Leadership Series. I was a mother desperate to improve the quality of life for my daughter, Ayla, who was just two at the time, and very sick.
I was drowning in my own worries and fears that came with her complex medical needs, but more so in the inability to access vital home care services she was approved to receive yet didn’t come.
Imagine being thrown into the deepest of seas and when you call out for help there aren’t enough life vests to go around or enough lifeboats to bring you and your family to safety.
I felt so powerless…until…I entered this building. It’s the day I became an advocate!
I was equipped with a vision for my daughter and new tools and the confidence to be a part of some kind of change to address a burning need that affects her life and so many other medically fragile children and adults in the Commonwealth.
That day ignited a flame so deep within me…and I’ve been “FIRED UP” ever since.
I’ll never forget a moment I shared with Ayla shortly after her heart surgery. I put my index finger in the palm of her tiny hand, we locked eyes seeing past all the tubing and drains, and she wrapped her fingers around it and squeezed with such intensity. Wow! At just 3 days old…my fragile and recovering newborn showed her FIRE and fighting spirit…that energy moved me. It strengthened me. It gave me hope that things would work out and be okay.
You see, we all have it in us…this FIRE!
And today, I want to remind you of that and call attention to it in hopes that each of you will set out to find what it is that sparks or rekindles the flame within you. Because when it happens, it’s an unstoppable force, you feel you can move through anything, no hurdle is too high no matter what your life circumstances are in that moment. You find a way! It’s so deeply rooted in love, you can’t help but burst into action and be a part of something bigger than yourself and your own lived experience.
There is no greater time to awaken your inner fire and unleash that advocate in you than when your life or the life of a loved one depends on it. And that time is now!
I’m counting on all your flames, and more importantly, the disability community is counting on them because it’s in our collective energy, strength, and spirit where I believe the resolve lies as we blaze through every obstacle that aims to unravel and weaken the civil rights of people with disabilities that so many before us have fought so long and hard for.
Yes, we face an uncertain future, but the one thing we have control over is our own certainty of being there, in some way, to do something; to take a stand; to have a voice; to be ready to take action to defend the current laws and protections in place while we also continue to advocate and lay the groundwork for new laws and protections that keep us moving forward.
Each one of you has a place and purpose on this advocacy journey! Whether you are just stepping on it for the first time or you’ve been paving the way for years, as Ayla’s favorite song demands…“This little light of mine, I’m gonna let it shine”. DO JUST THAT…let your light shine, let it shine, let it shine.
You will be a moving force…we will be a moving force… and the future will be bright.
For information about how you can begin your journey into home care advocacy, contact firstname.lastname@example.org.
Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.